We finished our first day at the University of Texas Medical Center. I had a lot of baseline testing to see what I am able to do now so they can compare it to any changes later. The two nurses we are working with are pretty cool, Steven and Fernando. Steven is from Iowa so he and mom had lots to talk about- although he did go to the "other" Iowa school, he's still pretty cool. We learned all about his dog which is a Basenji- it is an African dog and it doesn't bark, just yodels and meows like a cat (Mom and I spent some time on Animal Planet after hearing this!). Fernando is from Costa Rica and has lived all over the world. We met a neurologist and a psychologist who did all of the testing, as well as Dr. Cox, the principle investigator. He explained the theory of my procedure in more detail after mom asked about stem cell treatments that actually open the skull to put stem cells directly in the brain, or in through a spinal cord injection. Don't worry, I'm not doing that!
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| Doing some tests of my motor skills |
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| More tests |
In my procedure they will harvest my bone marrow and then get the stem cells out somehow (question for tomorrow). Then they will put them back into me via a transfusion. The cells first go to my lungs and then to my spleen. The theory is that this will work on my immune system to decrease the inflammation in my body that is there due to the ischemic (essentially oxygen deprivation) event during my birth. There is evidence to show that reducing this inflammation even years after an event can make a difference. After the inflammation is reduced nerves that were once inhibited may be able to work properly. This could lead to secondary changes in my brain, which is why they do pre and post MRIs.
As luck would have it, the medical center is right next to the Houston Zoo! My mom can not pass up a good opportunity for an adventure, so after all of my assessments we went to visit the animals. We have been to A LOT of zoos, and must be some type of connoisseurs of them at this point. We rated this one as very good. We got to ride the light rail back to the hotel too.
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| Elephants! |
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| Orangutans! |
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| Model of a native hut |
An interesting thing happened this afternoon at lunch too. We were sitting out side of this,little cafe eating our lunch and watching Animal Planet videos when an elderly man came up to us. He said to Mom (in a southern accent)," Is this your boy?" Mom said, "yes it is." Then he went on to say, "I see that you take good care of him, letting him eat first and you waiting to eat?" (which isn't entirely accurate, but ok). "There are going to be angels up in heaven taking care of you and your son can run, and jump and play." He could barely get out the last few words because he had started crying. My mom never knows what to say when things like this happen (mostly because she is trying to hold back tears herself) so she just ends up saying thank you. Things like this happen to us more often than you might think, and while we understand and appreciate the sentiment we also want them to know that we are very happy. Mom really wanted to say, "Thanks so much for your thoughtfulness, but know that we are very happy and while some days are hard we try to appreciate what we can do and try not to dwell on what's hard. Kai wakes up with a smile on his face every day, how many parents get to say that?" In fact, mom hijacked my blog in 2012 and wrote an
entire post about exactly this. Our theory is that older people especially think about what used to happen to kids like me, and maybe they feel bad about the rampant institutionalization? Ultimately, I don't want to make people cry, I am the Ambassador of Happiness and want to make people smile!
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| Ready to have lunch! |
Tomorrow we will be on to the next step in our great adventure. Starting at 5:30 am. Better get some sleep!
